Rare Lung Disease, Epilepsy and the Diagnostic Journey

Rare Lung Disease, Epilepsy and the Diagnostic Journey

Author: Katie Taylor, Certified Child Life Specialist January 28, 2026 Duration: 49:28

When your child survives one medical emergency only to face another, parenting becomes a constant act of advocacy and courage. Today's guest joins us to share her daughter's journey with rare and complex medical conditions, from early respiratory failure and unexplained hospitalizations to epilepsy, lung disease, and life with medical uncertainty. As a military spouse navigating deployments, Brittany shares what it means to walk this path largely alone, trust her instincts as a mother, and fight to be believed by medical professionals.

This episode explores navigating rare disease without clear answers, the life-changing impact of compassionate child life support, supporting siblings through medical trauma, and how rituals, play, and community help families find hope and meaning in the midst of chaos.

Download our free Children's Hospital Passport to help empower your child and family during hospital stays.

Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org.

 

Resources from today's episode:

Medical Support:

Nonprofit & Community Support:

 Connect with Brittany

Follow Brittany's journey as she shares life as a medical mom, military spouse, and advocate.

 

 Connect & Support from Child Life On Call 

 

Keywords:
Rare disease parenting, Medical motherhood, Medically complex child, Pediatric lung disease, Pediatric epilepsy, Intractable epilepsy, PICU parent experience, Military family healthcare, Parent advocacy in healthcare, Child life specialist support, Sibling support during hospitalization, Parenting after medical trauma, Coping with chronic illness, Undiagnosed disease journey, Hospital parent support

Medical information provided is not a substitute for professional advice—please consult your care team

 


Hosted by Katie Taylor, a Certified Child Life Specialist, Inside the Children's Hospital is a quiet space for the often unspoken journey of pediatric illness. This podcast moves beyond the clinical to explore the human heart of the hospital, offering conversations that feel more like a shared cup of coffee in a waiting room than a formal interview. You'll hear directly from parents and caregivers who articulate the complex mix of fear, resilience, and love they experience, while pediatric nurses, doctors, and therapists provide their unique professional perspectives on fostering healing and normalcy. The discussions naturally delve into the practicalities of family life disrupted, the emotional weight carried by all involved, and the small, profound moments of hope that sustain people. It’s a resource for anyone connected to a child’s health challenge, whether you're a family member seeking solidarity, a friend looking to understand, or simply someone interested in the intersection of medicine and humanity. Each episode aims to validate the listener's own feelings, whether they are in the midst of a crisis or reflecting on one, by presenting these authentic narratives without sugarcoating yet always with profound compassion. Tune in to find a sense of community and a deeper appreciation for the delicate, powerful work happening within those walls.
Author: Language: English Episodes: 100

Inside the Children's Hospital
Podcast Episodes
From Pharmacist to Mom: Navigating Type 1 Diabetes and Celiac Disease [not-audio_url] [/not-audio_url]

Duration: 40:48
What happens when the healthcare professional becomes the parent sitting on the other side of the diagnosis? In this episode, Katie Taylor sits down with Melissa Apa—a clinical pharmacist, diabetes educator, and mom—to s…
A NICU Dad Story: Life After a 25 Week Premature Birth [not-audio_url] [/not-audio_url]

Duration: 49:52
"I kept telling her, 'We've got this.' And inside, I had no clue what was coming next." What does it look like to be "the strong one" when your world is falling apart? In this episode, Katie Taylor sits down with Jared M…
Trisomy 13: Challenging the Narrative and Choosing Hope [not-audio_url] [/not-audio_url]

Duration: 59:45
What happens when a diagnosis labeled "lethal" doesn't tell the full story? In this episode of Inside the Children's Hospital, Katie Taylor sits down with Nicole, a mom of five, who shares her daughter Charlotte's journe…
NICU, Trach and Home Care: One Family's Journey to Stability [not-audio_url] [/not-audio_url]

Duration: 50:41
What does it look like when life changes in an instant—and a family learns to navigate the unimaginable? In this episode of Inside the Children's Hospital, Katie Taylor sits down with Marah, a mom of four, who shares her…
When a Parent Has Cancer: What Kids Understand Before We Say It [not-audio_url] [/not-audio_url]

Duration: 47:03
What happens when your child already senses something life-changing—before anyone has found the words to say it out loud? When serious illness enters a family, children often understand more than we realize. And for care…